Monday, March 14, 2011

So today was very informative! We learned so much about the upcoming surgery - big details and even very tiny details. There is still so much more we have to learn and we have yet to make the decision on the type of CC they will do but we feel much better after digesting the info from today. We learned that the surgery will take approx 4 hours and Camilla will be in the hospital about a week. Many of the details were not pleasant including the fact that she will spend her first night post-op in PICU (Pediatric Intensive Care Unit) and we will not be able to be with her. Brandon and I will be able to see her some after surgery but it hurts my heart that we won't be able to spend that first night with her. They assured me that she would be very 'out of it' for the first two days anyway so she wouldn't know but they don't know that anesthisia doesn't keep Camilla 'out of it' - she's either awake or asleep - she has never had that anesthisia 'fog' that most everyone deals with - but I have every confidence that they know what they are doing - I'm just being her Mommy and worrying :) I also came home with the names and numbers of several other families who have been through this so in the next week my mission is to contact these families and learn their stories. We also left the office today with ANOTHER new med, Lamictal, yeah I know , it's the one they gave us at nine months and said "hey if you see a rash it could be fatal so give us a call." Well after two days she had a rash (I'm pretty sure now that it was just diaper rash) but I gave them a call and we never saw that drug again - until now. And now I know MUCH more about this drug and since we are still despartely trying to go into surgery wiht the best amount of seizure control possible we will start it tomorrow. Continuing to wean off of the Banzel.

Our appointment with Dr. Blount, the neurosurgeon, is April 25th and we will set the surgury date at that appointment. It is then that we will have to decide between complete or anterior two-thirds. Dr. Kim assured me that the surgery would be in May and in fact could be as little as a week following the April appointment. This process is going much faster than we expected, we began in December and here we are looking at surgery in May - this is so rare and only confirms that this is God's Will for Camilla.

Camilla with Ally (L) and Dr. Kim (R)of note: Camilla actually had a seizure while Dr. Kim was in the room with her today - it was a mild seizure and her reaction was the same but very good for Dr. Kim to experience it first-hand - she noticed so many things in those brief seconds

specific prayer requests:new med to work and only good side effectssleep to improve with the wean of Banzelsuccessful surgery = no seizures, improved developmentfirst night after surgeryshaving a portion of her head (Mommy's being vain I know)

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

We are heading back to Birmingham today to see Dr. Kim, the neurologist, and we hope to get any results from the MRI and to find out MANY details concerning surgery. We are praying for safe travel and good news!

Wednesday, March 9, 2011

We spent this past weekend in Gatinburg with the kids and really had a great time. Since Brandon is working in Tuscaloosa now and still works at the kennels every afternoon he doesn't get to see the kids near as much as he used to. They really enjoyed having Daddy all to themselves for 4 days. We went on picnics, went to Cade's Cove, took the tram to Ober Gatlinburg, and did alot of walking and driving in the park and on the strip. We made lots of great memories-.

So when the phone rang about 3:00 this afternoon - I just knew it was Ally (surgical coordinator) - and I started shaking. I picked up the phone and before she could even begin speaking I felt a peace like never before. She immediately began saying that Camilla had been approved for surgery and that all involved felt that she was a prime candidate, but there were still some decisions to be made. Decisions that we will make when we meet with the neurosurgeon on April 25th. Decisions that will be difficult-

Ally went on to describe that the team could not decide between a 'complete corpus callosotomy' or an 'anterior two-thirds corpus callosotomy.' To describe corpus callosotomy for anyone who may have missed it before means to sever the bundle of nerves that connects the right and left hemisheres of the brain. 'Complete' would mean completely severing it and 'anterior two-thirds' means they would essentially just cut the top off of this bundle. Obviously 'complete' would give us the greatest chance at total freedom from seizures and 'two-thirds' would still give a good chance at total freedom and even if she did have them after this they would most likely be less frequent, less intense, shorter, etc... The kicker - if we do a 'complete' there would be no chance that she could ever read. It has to do with the mechanics of how you process the info you see and then translate that between your eyes and the different hemispheres of the brain. There are other things to consider with both of these options and we have many more questions about seizures and development post-surgery. Hopefully we will have these answered before we meet with the neurosurgeon and have to make this decision.

Hold on WAIT - did you get what I just said - they believe that she could be able to READ. That her development could progress that far and so much more. Ally went on to say that with completely devasted children (who cannot feed themselves, walk, say any words, follow any commands) that there is no question - 'complete' is the way to go for them. But they know that is not Camilla, they know that she is still developing and still learning and they want to know if we are willing to risk any seizure activity in order to allow her development every shot to progress. I know there are no certainties but what a wonderful thought!

I want to thank everyone who has prayed, come by, sent texts or messages, or called. I cannot describe how grateful we are to those keeping our sweet baby in their prayers. And believe me - the prayers are being answered! All day today I have been so happy, unanxious (except while the phone was ringing), and at peace. A weird peace - like there's a very small part of me screaming 'they just told you that your 5 year old is going to have major brain surgery why are you not freaking out? you should be screaming and crying and angry' - but I'm not. Now don't get me wrong, over the last 5 years there's been plenty of that - but not now - I promise that whatever is to be 'it is well'.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 8, 2011

So Camilla's conference is in the morning, I'm excited and sick to my stomach all at the same time. Prayers needed for this conference and specifically for God's will for Camilla to be the outcome and not the docs - whatever that may be - "it is well." BIG day - BIGGER God

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." Jeremiah 29:11

Monday, March 7, 2011

We have been playing with medication dosages for several weeks now and so far we have only seen more seizures and Camilla's disturbing reaction to each one. She is still screaming, clapping violently, and taking off running after EVERY seizure. She will also start saying NO,NO,NO very loudly immediately following. She has never had this type of reaction before and it is very disturbing and catches the attention of everyone around her at the time. Seizures are averaging 10-15 per day right now.

We just arrived back home after having Camilla's MRI today at Children's. We had to arrive at 6:30 am and were done with the procedure around 10:00. We don't expect any news from this really - just another view to have in hand going into surgery. And speaking of that, I just now received an email from Dr. Kim stating that she will present Camilla's case at conference THIS WEDNESDAY. We covet prayers during this time leading up to and throughout the day on Wednesday. This is such an important day in Camilla's life. This group of 10 doctors and specialists will be making decisions during this conference that will affect her quality of life now and for the rest of her life. Please pray for their wisdom and Godly guidance during this time. I will post the decision from conference when we know.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jeremiah 29:11

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.